Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Hello everyone. I am Travis. I have known about having PKD for around five years or so. I was first told i wouldn't have any worries till I was in my 80's or so. I got admitted to the hospital a year ago due to my kidney disease. Come to find out both of my kidneys are the size of regulation football's. I don't know much about this disease besides what I can figure out online. At first I got all my help from my aunt who had the same disease and ended her fight with PKD about 6 months ago and now I am back to trying to get help on understanding all the effects of PKD. My dad also had it and he passed away 9 years ago. I am 39 years old and at times now I feel like I am 80. Just over the last year this disease has taken such a toll on my body and my life. My lower back gives me a constant reminder that I have this disease. Seems like everything gets harder for me to do as time goes by. I lost my job due to my health. I was a heavy equipment operator and all the bouncing around and all got the best of me and they said my health wasn't good enough to work there anymore. Once that happened thing's just started falling from there. Depression kicked in on me extremely bad. Not sure if that is a side effect of PKD or its just the fact that life seemed to be heading down a short dead end road. Im not the type to complain on anything but its pretty much every day I'm in pain. Some nights it takes me about a hour just to get comfortable enough to sleep. I have learned the most important thing about having PKD is. After losing pretty much everything I have due to not being able to work and trying to see the doctor's my family has stood next to me on the rough and changing road that my life has become. Family support is the first thing anyone needs that has this disease. I have put my family through hell and back with mood changes and everything else that has been thrown at me. If it wasn't for them I wouldn't have the fight in me that I still have and I am so thankful for them

Replies

nicky73
nicky73

Hi Travis
Welcome to this support group. As you can read, it is quite different how this disease affects people. I know for 20 years I have the disease, it was discovered because I had hypertension at young age. I am the first in the family so have to find out all by myself. The good thing is that I am a doctor so I have some theoretical advances. What is your kidneyfunction? Is it only due to mechanical problems you can't work or also because of kidney dysfunction? I still work 100% but my work is not physically challenging. I try to stay as fit as possible by working out 3 times a week (cardiotraining on a crosstrainer). It really helps me to stay fit mentally as well and keep the bloodpressure low. I recognize the backpain. Since I have 2 enormous kidneys and a massive liver of 8 kilograms I experience most pain between my shoulders and at the attachment of my ribs. It is hard to cope with but I try not to let the disease take over my life.
I sleep with the head end of the bed a little bit up and have bought a maternity pillow. Thats sleeps better for me.
Have a good weekend.
Regards Nicky
Chewitt
Chewitt

Hi Travis,

I'm sorry that this disease and its repercussions have caused you so much difficulty. I'm glad, though, that you have the support of your family to help you through. As you say, that can be crucial. I think it would be difficult to face this all alone.

Depression is common in sufferers of PKD, as it is with any chronic disease. It's not part of the disease but it can be a result of the difficulty dealing with the symptoms. Lack of sleep makes this worse. Are you having professional help for the depression? This can be effective in helping you to develop coping strategies. I have been helped by mindfulness training, along with some CBT approaches. That maternity sleep pillow mentioned by Nicky helps with sleeping, too, if you have a large abdomen from enlarged organs. I have pillows everywhere. I hope coming to this group will help you as well.
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